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Well Legs I guess I'm still a potential member of the 'club' after last night. Horizant at 1700, to bed at 0030. No RlS but couldn't get to sleep so got up and went to my recliner. Immediately, the legs started moving when I went from bed to chair. Now THAT is a first...usually it's the reverse. So I walked for an hour, then went to the floor and stretched for about 15 minutes. The legs calmed and I went to bed, sleeping from about 0245 til the alarm went off at 0600. Will try the same 900 mg again tonight just in case last night was a fluke. Another poor night and I'll go up to 1200mg.

I'm going to go buy some Indica in the next few days and do the CBN 'thing' in the oven.

Day #5 at 900mg was a repeat of day 4 in that I went to be with no rls, couldn't sleep so got up after an hour or so. Immediately after getting up and sitting in the recliner the leg movement started. It took some walking and then some stretching before I got back to sleep an hour and a half later. Then I slept 6 straight hours. I'm tempted to bump the dose to 1200mg but not sure if that's premature. Of course, it's the weekend and the doc's not available for consult.

Jim, if you continue to have problems with the legs you could try supplementing with a small dose of kratom. Forgive me if I am repeating myself here. For actual urge-to-move symptoms I find kratom very effective (red vein borneo is probably best but for me all strains are helpful) - I don't find cannabis all that helpful (actually not at all helpful) for urge-to-move, only for sleep. Kratom also has sedatory powers although they don't usually cut it for me - I need the cannabis as well for that. I think in the US you can get it over the counter - or at least legally. It is handy to have some in for an as-and-when symptoms strike treatment.

Beth, I'm fortunate here since, being retired, every day is a weekend day for me. When I do get to sleep, I'm not usually keen to immediately jump out of bed when I wake. I have set an alarm a few times recently but it's not my habit. Still, my neuro insists that it's more important that I wake at about the same time each day, alarm or not, than it is to go to sleep at the same time each night.

No worries Legs about repeats Legs....I'm sure I'm doing it myself. Last night, the 6th on 900mg, was close to a repeat of others. I went to bed when I started dozing in my chair but never could fall asleep. Got up and to the chair, felt the legs start but a short time up and the movements ceased. I really like that! It took a couple of hours before I got tired and went back to bed/sleep. I got 3 hours solid and 3 more dozing fitfully.

I have the sense that just a little more Horizant, to 1200mg, may just get me to the point I'm looking for. The leg movement the last two nights might not even be noticeable were I to sleep just a little better. I have enough of the drug left for two more nights so I think I'll bump it tonight and see what happens. Tomorrow my neuro is back to work and I'll have a chance to talk to he or his med asst and see what he thinks after my experience tonight.

rvjimzhr1 wrote:Beth, I'm fortunate here since, being retired, every day is a weekend day for me. When I do get to sleep, I'm not usually keen to immediately jump out of bed when I wake. I have set an alarm a few times recently but it's not my habit. Still, my neuro insists that it's more important that I wake at about the same time each day, alarm or not, than it is to go to sleep at the same time each night.

Jim

I do not understand this. For insomnia, absolutely. But, what does sleep hygiene do for RLS? Dr B, if I remember correctly, has told me to sleep when I can. Afternoons work? Do it. Late mornings? Go for it. We need sleep desperately. It isn't that we do not WANT to go to sleep - we do! We are prevented from it. I would really like to see a study that shows that me getting up regularly (which my last fired neuro wanted me to do) would help me feel better or STOP the incessant movements and sensations.

Ann, I agree and I may have misunderstood my doc. My girlfriend, now fiancee, told me the same thing. I don't believe my neuro was suggesting that waking at the same approx. time daily has anything to do with improvement or cessation of RLS symptoms. He would probably, and I'll soon find out, be all for sleeping when I can, whether in my chair napping or otherwise, during bedtime "off hours".

I think you are right to try 1200g tonight - as far as I can see, many people are on a dose that high for rls (I presume you would be aware if there was any reason specific to you that mitigated against going over 900g) and it would be useful to see if it helps. Are you getting any side effects?

My doctor's (RLS specialist and researcher) primary concern was that I get at least 7.5 hrs of sleep each night. She wasn't at all concerned about "sleep hygiene", just sleep. And that it be restful sleep, not our "normal" broken sleep.

Beth, I'm fortunate here since, being retired, every day is a weekend day for me. When I do get to sleep, I'm not usually keen to immediately jump out of bed when I wake. I have set an alarm a few times recently but it's not my habit. Still, my neuro insists that it's more important that I wake at about the same time each day, alarm or not, than it is to go to sleep at the same time each night.

sad sad. I'm sure you didn't misremember it. I'm sure your neuro was spouting the accepted dogma without a lot of thought. I am also sure there have been no studies testing all this sleep hygiene stuff on RLS/WED patients. I'm with Ann, here: as far as I can tell, we're chronically sleep-deprived and experiencing gradually increasing malfunction of bodily systems that perhaps isn't noticeable yet except as more illnesses, injuries, infections, etc, that will eventually accumulate to an earlier death, all caused by the chronic sleep loss, so the thing we need is more sleep. Catch it when you can.

I can't see how getting up at the same time would help anything in my life, except shorten it. (Well, I AM getting up at more or less the same time, to make it to work, but I have a special accommodation regarding time - these days I get in at 1 or 2 PM.)

I appreciate all the comments about "sleep hygiene" and I agree. My goal is 7-8 hours uninterrupted sleep with maybe one trip to the loo. The next time I get to see my neuro I'll be trying to pin him down on his goals for me.

Last night was 1200mg Horizant and I got about 6 hours sleep in several segments of roughly 1 1/2, 2 and 2 1/2 hours. The only RLS symptoms I had were mild leg movements in bed for about a 15 minute period before I went to sleep. Certainly this in a vast improvement since getting off Requip and trying Lyrica and Horizant. Still, my expectations are for much better sleep and I hope this neuro expects more also. We'll see. I have one more dose of 1200mg and just left that message with the doc's office. So we'll see what tomorrow brings.

Second night 1200mg not particularly good. Dosed at 1840, to bed at 220 without the usual "dopey" feeling from the Horizant. My arms started moving at 2300 and I got up and to my chair at 2330. Watched TV with mild and intermittent arm and leg movement 'til about 0200 when I started nodding off. I fought that 'til about 0330 when I went to bed. Immediately, I'm wide awake (not unusual and why I hesitate to even go to bed lately). Finally got to sleep about 0600 until 0945. Out of meds now and waiting for a return call from docs office.

I wonder if you are dosing too early...or if splitting the dose would help. That said, I have never been able to get this class of med to help me, getting to the highest dose with little help. And, many people do lose the sleepiness over time - sounds like that may have happened to you.

I'm glad you seem to be able to keep in close contact with your doctor, that's nice. Is it the neurologist's office you leave messages at, or your GP? (re "I have one more dose of 1200mg and just left that message with the doc's office")

I think you have the right approach - you have a goal, an expectation of what the treatment will give you, and you'll ask the neuro how he can get your there. The wide-awake thing you're experiencing and the fragmented sleep is common, and probably part of the disease. I am not sure how your neuro will tackle it though, since you're already taking loads of the medication that seems to help it the most.

My experience with gabapentin (similar to Horizant) is that it stilled the sensations but not the urge to move, in a way that I could lie in bed without getting up but constantly kick-kick-kicking. Couldn't sleep. I went as high as - I forget actually - it was at least 1800 mg but might have been higher. Even combined with a large dose of codeine, it wasn't enough to control my symptoms and allow me sleep.